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According to CUK's figures, I have made more posts than any other forum member, almost 22,000!
Having had ten carees in the last 41 years, I suspect that is also a dubious record!

I have been increasingly concerned that the same problems crop up over and over again, and wonder if forum members could help CUK nip some of these problems in the bud, once and for all?

I've just been to the main site, copied and pasted one of the main aims of CUK."We will keep campaigning until every carer gets proper recognition and support"
Would be useful to have specific goals which reflect this aim for 2021?

From my own observations, councils struggle to meet the needs of those with the greatest needs.
People who need a lot of night time support.
People who have challenging behaviour.
Services of the right quality at the right time are not available, although the Care Act says they should be.

I recently met a mum whose adult daughter had challenging behaviour, the LA had awarded her a large care budget, but mum couldn't find anyone able to care for her daughter, so had to send back the direct payments and care for her herself. The LA told her she couldn't have the money for the care she provided, although the Care Act says she can.

Those with the highest needs should be entitled to Continuing Health care, but in reality, it's a poscode lottery. In my area there is a very low rate of eligibility, in parts of the north west of England, you are 800% more likely to be eligible.

Hospitals are continually ignoring the rules about discharges, leading to unsafe discharges and carers wrongly being told they have to care.

According to CUK's figures, I have made more posts than any other forum member, almost 22,000!
Having had ten carees in the last 41 years, I suspect that is also a dubious record!

I have been increasingly concerned that the same problems crop up over and over again, and wonder if forum members could help CUK nip some of these problems in the bud, once and for all?

I've just been to the main site, copied and pasted one of the main aims of CUK."We will keep campaigning until every carer gets proper recognition and support"
Would be useful to have specific goals which reflect this aim for 2021?

From my own observations, councils struggle to meet the needs of those with the greatest needs.
People who need a lot of night time support.
People who have challenging behaviour.
Services of the right quality at the right time are not available, although the Care Act says they should be.

I recently met a mum whose adult daughter had challenging behaviour, the LA had awarded her a large care budget, but mum couldn't find anyone able to care for her daughter, so had to send back the direct payments and care for her herself. The LA told her she couldn't have the money for the care she provided, although the Care Act says she can.

Those with the highest needs should be entitled to Continuing Health care, but in reality, it's a poscode lottery. In my area there is a very low rate of eligibility, in parts of the north west of England, you are 800% more likely to be eligible.

Hospitals are continually ignoring the rules about discharges, leading to unsafe discharges and carers wrongly being told they have to care.

How can we work with CUK to resolve these issues?

What about a meeting to discuss your concerns?

Full time carer of my little brother with spina bifida. He is thriving!

Thara
With the greatest respect, Bowlingbun lives near the New Forest, CUK head office is in London! Her concerns are for every one, not just herself. These things have been discussed at various times.
I wonder if CUK could set up petitions, starting with one of the issues, that we could all sign ( if we agree).as age UK do. Coming from an organisation it could have more clout? I'm not certain if it would be within their policy but at the moment I can't think of any other suggestions.

If your loved one has high care needs Social Services or the NHS should be meeting those needs, directly or indirect!y. If they can't or won't, family had to step in. So it's impossible to go out to work. There need to be better support available, but day centres are not really the answer if you are bedridden. At times, family might be able to help, but not free! We all have bills to pay.

Hiya Bowlingbun, This is right up my street as you know. I can bang on about it endlessly as an individual as you know but I also know many carers are affected by it and we all need to ask the question of what we want as goals for discussion and what exactly is being done about it, to bring the issue to light in the public eye. I encourage all carers to get involved for their own future and also the future of care.
I think this is the thread you've started Bowlingbun( which is brilliant) which should encourage the voices of carers to be coming forward and actually saying what they hope for regarding goals and our voices projected by CarersUK for the future of caring.
Otherwise caring especially unpaid will become extinct as no-one will be willing to do it.

I have achieved some great things in my life. One of those great things is managing my son into adult life.

During 2020 Carers UK will be developing its new strategy for 2021 to 2025 (when it will be our 60th anniversary). Later in the year there will be opportunities for members to feed their ideas into the new strategy and we'll let you know about these on the Forum.

In the meantime, I will pass on your initial thoughts to colleagues in our policy and campaigns team.

I'm glad you brought this subject up, Bowlingbun. The points you raise are well said.

Around Christmas time I commented that the carers life could be less burdensome if our carees were treated better during their hospital stay, regarding weakness due to bedrest and pressure ulcers due to not being turned or inappropriate mattresses.

I was directed by CUK to the campaign to encourage ambulance paramedics and A&E staff to put patients on chairs, rather than stretchers. Reviewing that program, it was clear to me it was more about freeing up corridors than anything else.

If the hospitals could be persuaded to implement better proven practices, our loved ones may not experience the undue decline in health and increase in care needs which so often happens during a hospital stay. This has long term negative impact on expenses and demands placed on the carer.

I would request that CUK speaks to this issue whenever the opportunity presents itself, even if it's not adopted as a formal project.

I have always believed that constructive criticism is best, you should never criticise anything unless you can suggest something that might improve the situation.

In an interview, Meghan Markle said something along the lines of "we shouldn't just survive, we should THRIVE" and I can't get this out of my head. I was fit, well, and very strong until my son was brain damaged at birth. 40 years on, after 8 operations removing bits of me, I'm a wreck, I often joke that if I was a car by now I'd just be in a scrapyard for donor parts! I've had some very dark times, when I wondered if it was really worth being alive any more if my role was just to run around after everyone else? I know I'm not alone in that.

How could CUK support us more, at minimal cost? What do we need to help us THRIVE, not just survive???

Some things will take a lot of work, planning, reaearch and campaigning. Others could be done within a week!

We all know that the NHS and Social Services are ignoring rules about assessments, care plans, discharges etc.
Forum members have very little "clout" when trying to make a difference for our carees.

ALMOST IMMEDIATELY?
It occurred to me earlier this week that if CUK could write a sample letter of what the rules and regulations were, that we could download ourselves it might "concentrate the minds" of decision makers.
This could be done almost immediately.

WITHIN 3 MONTHS?
In the longer term, it would be much more effective if CUK sent out the letters themselves to the CEO or Director concerned, and kept a list of how many letters they sent to each organisation every year. That would take longer to organise, but not too long.